Tuesday, August 25, 2015

A Special Person and a Special Anniversary

I could easily write yet another outraged post about something racist or sexist or xenophobic that one of the candidates said. I could easily write about the misinformation I read online, or the folks who prefer to compare people they disagree with to Hitler.  But not this time.  Today, I want to focus on something positive.  I want so talk about someone who means a lot to me.  His name is Jeff, and he is autistic.  Today marks the 31st anniversary of when we met.

In August 1984, I was between jobs, trying to establish my radio consulting business, and seeking ways to make some extra money.  I saw an ad for vacation relief workers at a human services agency, and since I had a degree in counseling, I figured I would apply. The pay was low-- you don't get into human services for the big bucks. [Note to self:  I need to write an outraged post about how poorly we pay the workers who do some of the most difficult and often thankless jobs in our society, including home health care workers, nurses' aides, and care-takers for people with special needs.]  But it was work I could feel good about doing, even if it wasn't going to make me rich.

I found some agencies were very committed to the folks they were caring for, and tried to treat them well; but sadly, I also found agencies that operated over-crowded, under-staffed facilities, with management that seemed indifferent to the people they were supposed to help. It was in one of those places that I met Jeff.  He was 27, and had never spoken.  He made various noises, he screamed and hit himself, he rocked back and forth, he repeated what others said (a behavior called "echolalia").  He usually seemed oblivious to the chaos around him-- a good strategy, perhaps, since the group home where he lived was indeed chaotic.  There were a few very kind staff people, but they were clearly overwhelmed.

I don't know what there was about him-- but I don't believe there are accidents in life, so I am sure that he and I were supposed to meet.  And there I was, a very driven and often impatient professional broadcaster, spending time with an adult with autism who rarely acknowledged anyone and was mostly fixated on food. (I later found out that he had previously been in an institution where staff starved him if he "misbehaved.")  And there he was, unable to make eye-contact, unable to communicate, with a sort of haunted look about him.  Because of his behaviors, and because of a lack of staffing, the group home "managed" him with large doses of psychotropic medications.  And that was his life.

I was told I was wasting my time to talk to him.  I was told he'd been this way for years and there was nothing that could be done. I was told I wasn't an "expert" in autism.  But when I looked into Jeff's eyes, I saw a human being, and I made him a promise that I would become his advocate.  It was a promise I honored even after I went back to my broadcasting career.  I also promised I would get him out of that group home and find him somewhere he could get the help he needed and deserved.  At first, I had no idea if he understood a word I was saying to him, although I wanted to believe he did.  It took six months before he spoke to me-- the first thing he said was "I love you, Donna."  It still makes me emotional to remember that moment, even though right after it, he returned to rocking back and forth.

But gradually, he began to communicate more.  My then-boyfriend (and now husband) would take him swimming or hiking; I took him to museums and restaurants.  We both kept encouraging him and teaching him, whether he seemed able to respond or not.  Fast-forward to today:  Jeff has over 350 words in his vocabulary, and while he isn't what you and I would call "conversational," he is very capable of making himself understood.  After a battle with the state bureaucracy (which I won), I was able to get him out of the group home; and I also worked with some doctors to get him off of the medications he didn't need.  These days, he lives with a very nice family, has a job, and is supervised by an agency that is very committed to his well-being. My husband and I see him nearly every weekend.  As for the behaviors I was told he would always have, they are rarely seen-- he seldom screams or rocks back and forth.  In fact, if he knows you, he'll say hello and he likes to be hugged.   He thinks of me as a mom-figure, and he thinks of my husband like a dad.

Other than knowing the members of Rush, I can honestly say that knowing Jeff changed my life every bit as much, although in a different way.  He helped me to become more patient (it takes a while to teach him something new, but once he learns it, he doesn't forget it).  He helped my husband to become more outwardly affectionate (my husband is a very kind person, but he grew up in that era when guys were supposed to be "macho."  Jeff likes to be hugged ... so my husband became more comfortable with public displays of affection from someone who looks like a big guy but thinks of himself as a kid).  I continue to be amazed at how much has changed for the better in Jeff's life, how he has achieved so much more than anyone thought he could.  I remain his advocate, but these days, he is surrounded by lots of people who love him, and who reward what he can do rather than punishing him for what he can't do.  And if there's a message here, it's that things are not always what they seem, and when someone says "oh you'll never be able to do X," that just might not be true... Happy anniversary Jeff; I cannot tell you how pleased I am to see how far you've come, and to be a part of your journey.

2 comments:

  1. Very moving and very loving. My friend in Canada has a son who is autistic too. Though his spectrum is different from Jeff's, the fact that her son is autistic opened her eyes to a whole new idea. My friend never used drugs to make him acceptable and what is fascinating is that "O", the son, has a knack to make friends...with animals.

    My friend took "O" to the petting zoo and animals: goats, sheep and other animals would come up to him and want to be petted. His energy seems to also attract cats too. What may be feral cat, ends up being a very loving part of the family...which eventually became a little too crowded, so the family would take the stray pet to a no-kill shelter for adoption.

    What's fascinating about people with autism is that they are amazing people. People like:

    Mozart
    Andy Warhol
    Lewis Carroll
    Dan Aykroyd
    Sir Isaac Newton

    And the list goes on. Though Jeff may not be "famous" his energy, what the Chinese call chi or Japanese call ki has managed to break barriers of people by tapping into their inner self...like your husband. Though I am not a scientist or a geneticist, I believe that autism MAY be a part of the evolutionary process that some may have, while others may not.

    Yet it is your love for Jeff that proves that maybe we need to look at the spectrum in a different manner. Doc, your story is beautiful and it is your revelation that shows that there is hope for humankind. It was your love that allowed Jeff to open up and now he is returning the love unconditionally.

    Great work doc and I hope to read more from you.

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  2. Lovely, heartwarming story.

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